Day +387: Almost cut my hair…

“It happened just the other day
It was getting kind of long
I could have said it was in my way”

2011-12-14beforehaircutsOkay, not almost. As you can see in the “before” photo, my hair was just plain wild…so I got it buzzed on December 14, more than a year after my last haircut. My “after” pic is in the gallery. All of my doctors are in agreement that my hair probably will not ever be much thicker than it is now, so I’m seeing lots of caps and wigs in my future. I readily admit I miss my hair but recognize it’s a small price to pay in exchange for my life. Still, I’d rather have both (along with all of my brain cells intact, self-hydrating eyes, and fully functional salivary glands). Just call me greedy. By the way, for readers who have an SCT or BMT in their futures, permanent hair loss is not common. It’s more common to have changes in color or curliness.

After the haircut, I finally ordered new glasses. My prescription was already 4 months old. The new glasses are almost like the old except a bit smaller. They should be ready next week.

These small tasks somehow feel larger and more significant, in a good way, than I expected. Paradoxically, their significance lies in their fundamental ordinariness. I’ve not had any debilitating physical impairments for many, many months but I’m finally moving forward mentally, past my illness and resuming normal (delightfully mundane) life as I knew it before my MDS diagnosis.

Another milestone – after Thanksgiving, I eliminated the dietary supplements from my morning milkshakes (the mainstay of my diet for the past year). In case you noticed a recent drop in Häagen-Dazs stock, as of December 10 I resumed eating all “regular” food with no milkshakes at all.

December 15, I had my 6-month dental check-up. Unfortunately, my enamel is eroding, and I have two new cavities at the root line underneath old, large fillings, most likely due to my severe dry mouth. The old fillings will have to be removed to do the new ones so I see a lot of money going to my dentist next month. I hate getting dental work. It isn’t especially painful but the sounds and vibrations drive me crazy, admittedly a short trip.

Speaking of oral issues, I tried the steroid rinse for a few days. It tasted terrible with a lingering aftertaste and made my mouth a little sore. I worried about upsetting the balance and improvement I’d achieved and consulted with NIH and Hopkins doctors via email. They were in agreement that I should discontinue the rinse and continue doing the acupressure. The NIH dentist, after conferring with her colleagues, said that the rinse might not be that beneficial for me anyway since not much would be absorbed in the salivary glands where I need it.

I saw my local hematologist, aka my favorite doctor, on Monday. My blood counts are very good:

December 19:
WBC: 5100 (norm 3000-11200)
ANC: 2800 (norm 1400-9000)
Platelets: 284 (norm 130-382)
RBC: 4.11 (norm 3.90-4.90)
HGB (hemoglobin): 14.5 (norm 11.5-14.3)
HCT (hematocrit): 42.3 (norm 34.2-42.2)
Alkaline phosphatase, S: 215 (norm 25-150)
AST: 54 (normal 0-40)
ALT: 48 (normal 0-40)

Dr. B says it will take several months for the Vidaza to be completely out of my system and to determine my new baseline. He commented again how remarkably well I’ve done. I replied that I give him a large part of the credit for my current well being. Beginning with my first meeting with him in January 2010 and continuing throughout the process, he made the right decisions regarding my treatment. He biopsied me right away and referred me to University of Maryland where I could be seen by a specialist within days instead of waiting weeks to get in at Johns Hopkins. He conferred with my oncologist at Maryland and oversaw my Vidaza treatments. He always treated me with kindness and respect and answered my endless supply of questions patiently, frankly, and intelligently. He encouraged my consulting with multiple facilities prior to choosing one for my transplant. He took the time to read and discuss research papers I got from other sources. He replied to my emails quickly and succinctly. He clearly understood and sympathized with my fears and doubts. He never downplayed the seriousness of my illness but remained ever hopeful. He gave me good advice (better than that of my transplant doctor) for staying well while awaiting engraftment and beyond. He prescribed medications and gave medical direction sensibly. He wasn’t afraid to confidently convey his own opinions, including his reasons, but knew his boundaries and referred me back to my oncologist or transplant team when appropriate. He was never too busy to chat informally about everyday things that had nothing to do with illness – books, films, electronics. He listened. He cared. My next follow-up with him isn’t until mid-March. I’ll miss him.

Michael commented that I have Dr. B high on a pedestal. I guess that’s true. After reading and hearing the stories of so many others, I realize how differently everything might have turned out if I hadn’t received such good care from him and my other doctors, especially in the beginning when I knew so little, and critical decisions had to be made. Many others have not been so fortunate.

Both Michael and I will need time to adjust to seeing my blood counts far less frequently than twice a month. They’ve simultaneously been our yardstick to measure progress and our lifeline to sustain hope.

Yesterday, I saw my dermatologist. She believes the itchy bumps on my face and ears are seborrheic dermatitis. The cream prescribed by her PA last time isn’t helping so she’s trying me on a different one with follow-up in a few weeks. She loved my shoes, the purple “oil slick” Danskos I got last year :-).

I’ll probably finish my physical therapy next week.

As always, I love my iPad. I’m also enjoying my Kindle and getting accustomed to my iPhone. The tiny screen on the phone is hard on my eyes, and Siri doesn’t seem to understand me as well as my old phone did, but I do like the smartphone convenience for email, calendars, and surfing. It sure is a lot less weighty than carrying around the iPad.

I’ve started a new album in the photo gallery for the coming year and posted some snapshots. I need to post some more from October and November but that will happen another day.

Guess that’s it for this week’s news. Happy Holidays, everyone!!!! We have much to celebrate.

5 Comments:

  1. I had to go look that one up. It seemed like a new Wierd Al that I hadn’t seen/heard.

    Apparently just some Crosby guy instead 🙂

    Merry Christmas!
    -Mike, Cindy, and the DMGJ.

  2. I’m glad to hear things are going well and that you are returning to “normal” life. It’s too bad about the hair, but the wig you wear right now is pretty fantastic, and you’ll save a ton of money on haircuts, though, I suppose, the wigs aren’t cheap. *shrug* Anyway, have a Merry Christmas!

  3. Karen, You look SO GOOD! I really love the wig and I hope it is comfy. It is so nice to read your good news. It is amazing what the last 12 months have been and where we are today. I’m going to get my hair cut today! It is one year long (?) but I am opting for a pixie a bit longer than Jamie Lee Curtis. One because it will be easy to care for and two so Angela isn’t the only one with short hair!

    Enjoy your Christmas and continue doing well. I am proud of you and I am following behind you! Hugs, Lori

  4. merry christmas to you both. Im on my sons actually new laptop computer that santa gave him.
    with the help of some wondrful elves I thought it might be time for the real deal for school. Every other 12 year old is far more techno superior
    than us and have more that I felt it was his turn.
    My nephew went out and did the deed and santa
    gave it to him. He pretended to faint when he found out it was brand new. I love old used free sstuff and accept everyones cast offs. clothes furniture pcs etc etc but IM NOt a hoarder!!!! this is so hard to type on this new laptop Ive gotta go…xoxoxoxoxoxox dana

  5. Andy, Thomas, and John

    It was wonderful spending time with you over the holidays!! Glad you are feeling better and looking up! I see a Happy 2012 in your near future!!!
    Love you,
    Andy Thomas and John
    and Ted E Bear!

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